Hemochromatosis (hee-moe-kro-mah-toe-sis): What Is It?

“My mother and I were very close…when she died from hereditary hemochromatosis/ iron overload disease, I was broken hearted…don’t let this happen to anyone in your family …learn how to prevent the symptoms, organ damage and premature death that HH can cause…”

                                     Sandra Thomas, President, AHS

Sandra Thomas, president/founder of the American Hemochromatosis Society (AHS), sits on the bed where her mother died. She is holding dried flowers from her mother’s funeral.

Hereditary hemochromatosis (HH), also known as iron overload disease, iron storage disease, or "genetic iron poisoning", is the most common genetic disease in the U.S.A. according to the U.S. Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. One in 8 are "silent carriers" of the single HH gene mutation and 1 in 100-200 have the double mutation putting them at high risk for developing full blown HH. HH can affect men, women and children at any age. Most of the 33 million Americans who have the HH gene mutation don’t know it but it can be diagnosed easily and quickly. Hereditary Hemochromatosis is not the same as neonatal hemochromatosis (NH).  See www.neonatalhemochromatosis.org for more information on NH.

Do you or anyone in your family (living or deceased) have (or have a family history of) these symptoms or risk factors?

  • Arthritis
  • Joint pain/Replacement
  • Diagnosis of Fibromyalgia/Chronic Fatigue Syndrome (CFS)
  • Anemia (low hematocrit/low hemoglobin)
  • Hypothyroidism (low thyroid function)
  • Impotence/ED/Early menopause / Irregular periods
  • Infertility /hysterectomy/have never had children
  • Diabetes mellitus /High blood sugar
  • Darkening, greying, or "tanning" of the skin without exposure to the sun
  • Heart Disease/Heart Attack
  • Stroke
  • Irregular heartbeat
  • Bypass surgery
  • Hair loss/Hair thinning
  • Weight loss
  • Set off airport metal detectors for no apparent reason
  • Ancestry of Celtic (Irish/Scottish/Welsh) British/Scandanavian/Northern European origin
  • Liver disease/hepatitis/cirrhosis/primary liver cancer/elevated liver enzymes
  • Enlarged liver/yellow skin & yellow eyes (jaundice)
  • Dark urine/pale or white stool
  • Red palms of the hands/Abdominal pain
  • Liver and/or heart transplant or need for liver or heart transplant/On transplant waiting list

Ask your medical team for these HH blood tests by name: serum iron, TIBC (total iron binding capacity), and serum ferritin. Danger zone: % saturation greater than > 40% and/or ferritin greater than > 150 ng/mL. Ask for DNA testing by name for the Cys282Y & His63D mutations for both children & adults which will assess genetic risk for HH before damage occurs. Treatment is simple: bloodletting identical to a blood donation.

If you want answers quickly and easily, you can order the tests for hemochromatosis yourself through: www.healthcheckusa.com   Their toll free number is: 1-800-929-2044.  The results will be confidential and sent directly and only to you just a few days after the test is performed.  HealthCheckUSA does not accept insurance of any kind, and you must pay out of pocket.  Hundreds of HH patients have used this lab to perform genetic tests as well as iron profiles with accurate results. 

To learn more or to make a donation, please call the American Hemochromatosis Society toll free information line: 1-888-655-IRON (4766) or call the office at: 407-829-4488 or write to:

American Hemochromatosis Society (AHS)
P.O. Box 950871
Lake Mary, FL 32795-0871 U.S.A.

 

 

 

 

 

Josephine Bogie Thomas
April 25, 1921-Mt. Sterling, KY
May 13, 1999-Pittsburgh, PA

 

                                                 

        Josephine died from Hemochromatosis in 1999...

 

 

“We all have to die of something, but it doesn’t have to be hereditary hemochromatosis”


Sandra Thomas, AHS President & Founder